Re: Question for all you professional PCR interpreters!!!! Help

January 24, 2008

Thanks Sharon-

And I do feel good. And my CBC last week was good (normal for me) as well.

For the last 2 1/2 years I have been neg on FISH and all that. I guess I am

a little nervous about the decimal point. I wish they would just pick a lab

and stay with it!

I don't know if I will be able to wait. I might call them back and have

them fax me the actual report so I can look at it myself. Not that that will

change anything but may shut me up for now.....

Thanks for the response!

Jen

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

January 24, 2008

Dear ,

I have been through the same thing for so many PCR tests. The first was

0.032 then three months later it was 0.00 then three months later it was

0.076 then this last one was 0,00. I was freaked out too. When I called for

results the dr. says " you are negative " and I said " that is not the results

I want " I want the percentage " He emailed me back and said " it was 0.00 no

trace..so I feel great. Well now I go in again in another month and a half

and do it again. It had better be 0.00!!! I have the same lab all the time

" Quest " so who knows what makes it go up and down. This is my way of

thinking----as long as you feel good, your blood work is good, and you know

that you are 0% on the FISH and 0% on the Cyto then I don't worry. I have

been that for 3 years. And now I do not have the BMA anymore so I guess I

will depend on the PCR test. Unless things take a drastic jump.. I guess I

have to depend on that.

You will be fine. Don't worry

Sharon

_____

From: [mailto: ] On Behalf Of

vegasrnjen@...

Sent: Thursday, January 24, 2008 12:31 PM

Subject: [ ] Question for all you professional PCR interpreters!!!! Help

Okay, so today they call me with my PCR results from last weeks blood work.

I was 0.0003 last time they gave me the result. Today this nurse (whom I

don't have much faith in) called and told me " you are still in Hematological

remission) like I didn't already know that. Been there for 2 1/2 years. I

told her I needed the actual PCR numbers. She told me 0.034. " Isn't that

good, how to do feel " ..... I told her better, before she gave me those

numbers.

I asked her, " Isn't that a log more then last time as it was PCRU last time.

She said no because we are using a new lab and they deal in % and not just

numbers....???

Has anyone ever heard of this or know what she is talking about. This is

only my 2nd PCR since being on Spyrcel and I hope I am not losing response

already? I am freaked out. I asked her if she would send the blood to the

old

lab so I could have a comparison that is the same and she put me on hold to

speak with the doctor and then came back on and said, he said everything's

fine

we will repeat it in 6 weeks.......

Any suggestions???? Am I reading too much into this. I don't know if I can

wait 6 weeks. If I lost a whole log.....I don't know, I am baffled.....

Help---

Hugs and hope-

35

CML 5/13/05

Gleevec 800mg until 8/07

Spyrcel 100mg 9/7/07

Wife and mother of 3 (12,8,7)

**************Start the year off right. Easy ways to stay in shape.

http://body.

<http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489>

aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

January 24, 2008

If the first is a ratio and the second a % there a factor 100 between

the two. So the first 0.0003 would be equal to 0.03%, what is about

the same as the second result. Assuming they gave you an accurate

information. You should check on the lab report when you have it.

Marcos.

On Jan 24, 2008 12:48 PM, <vegasrnjen@...> wrote:

>

> Thanks Sharon-

>

> And I do feel good. And my CBC last week was good (normal for me) as well.

> For the last 2 1/2 years I have been neg on FISH and all that. I guess I am

> a little nervous about the decimal point. I wish they would just pick a lab

> and stay with it!

>

> I don't know if I will be able to wait. I might call them back and have

> them fax me the actual report so I can look at it myself. Not that that will

> change anything but may shut me up for now.....

>

> Thanks for the response!

>

> Jen

>

> **************Start the year off right. Easy ways to stay in shape.

> http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

>

January 24, 2008

Hi ,

You need to clarify which of those numbers are whole numbers and

which are percentages. The best way to do that is by getting a copy

of each test. This way there's nothing " lost in translation " , it'll

be right in front of you.

The other point though, is that if both tests were done at different

labs, you really can't compare them. Even if they're being reported

the same (either both percentages or both whole numbers), different

labs do the test differently so you're looking at apples and

oranges. I've had the exact same blood sample go to two different

labs and the result was more than a log difference.

The world of PCR's is very frustrating in deed!

Take care,

Tracey

>

> Okay, so today they call me with my PCR results from last weeks

blood work.

> I was 0.0003 last time they gave me the result. Today this nurse

(whom I

> don't have much faith in) called and told me " you are still in

Hematological

> remission) like I didn't already know that. Been there for 2 1/2

years. I

> told her I needed the actual PCR numbers. She told me

0.034. " Isn't that

> good, how to do feel " ..... I told her better, before she gave me

those numbers.

> I asked her, " Isn't that a log more then last time as it was PCRU

last time.

> She said no because we are using a new lab and they deal in % and

not just

> numbers....???

>

> Has anyone ever heard of this or know what she is talking about.

This is

> only my 2nd PCR since being on Spyrcel and I hope I am not losing

response

> already? I am freaked out. I asked her if she would send the

blood to the old

> lab so I could have a comparison that is the same and she put me

on hold to

> speak with the doctor and then came back on and said, he said

everything's fine

> we will repeat it in 6 weeks.......

>

> Any suggestions???? Am I reading too much into this. I don't

know if I can

> wait 6 weeks. If I lost a whole log.....I don't know, I am

baffled.....

>

> Help---

>

> Hugs and hope-

> 35

> CML 5/13/05

> Gleevec 800mg until 8/07

> Spyrcel 100mg 9/7/07

> Wife and mother of 3 (12,8,7)

>

> **************Start the year off right. Easy ways to stay in

shape.

> http://body.aol.com/fitness/winter-exercise?

NCID=aolcmp00300000002489

>

January 24, 2008

This explanation from Marcos makes sense, it was sort of how I was reading the

part in which you wrote that the nurse said: " ...because we are using a new lab

and they deal in % and not just numbers... " A horribly confusing way to state

this on her part! Wow. Yes, 's doc wont even get into the discussion with

us. Well, let me rephrase that, if we pushed it, she would, but never

pushes it with her and just has been asking for the copies of the PCR tests and

we figure we will call the labs ourselves...

Good luck...

@...: montereyunderwater@...: Thu, 24 Jan 2008

12:56:59 -0800Subject: Re: [ ] Question for all you professional PCR

interpreters!!!! Help

If the first is a ratio and the second a % there a factor 100 betweenthe two. So

the first 0.0003 would be equal to 0.03%, what is aboutthe same as the second

result. Assuming they gave you an accurateinformation. You should check on the

lab report when you have it.Marcos.On Jan 24, 2008 12:48 PM,

<vegasrnjen@...> wrote:>>>>> Thanks Sharon->> And I do feel good. And my CBC

last week was good (normal for me) as well.> For the last 2 1/2 years I have

been neg on FISH and all that. I guess I am> a little nervous about the decimal

point. I wish they would just pick a lab> and stay with it!>> I don't know if I

will be able to wait. I might call them back and have> them fax me the actual

report so I can look at it myself. Not that that will> change anything but may

shut me up for now..... >> Thanks for the response!>> Jen>>>

**************Start the year off right. Easy ways to stay in shape.>

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489>>>

January 25, 2008

When, after reading quite a bit on how the rt-qPCR is done, I tried to

discuss it with my hemato he quickly admitted he didn't know the

signification of the numbers beside lower is better and -3 log is MMR.

But he's not a cml specialist. The dr I see when I am in vacation in

Paris is a cml specialist and seems pretty knowledgeable, but she was

not very happy on the whole pcr testing mess.

If you want to be able to get more information from your pcr test you

should ask to have a copy of the raw lab report, not just the

executive summary people usually get. It should state the exact

translocation tested (the probe), the # of copies of the gene tested,

the ratio with the # of copies of the gene of reference, the baseline

ratio. The log reduction can be computed by dividing the 2 latter #s

and taking the decimal logarithm. The baseline may be the pcr ratio at

dx if there was one. In general it is the average value of the lab at

dx.

On the other hand, I think that for most of us, getting too obsessed

by the pcr #s is not too helpful. As long as you reach CCR (FISH = 0

or PCR = -2 log) in a reasonable time and the pcr #, whatever it is as

long it is consistent (same lab, same unit), doesn't go up sharply,

things are going well. The latest IRIS 6 years update shows the odds

of relapsing if you are in this case are very low. For other cancers,

people that are told they are cured have a chance of relapsing equal

or greater than that.

Marcos.

On Jan 24, 2008 3:37 PM, Cervera <weez_555@...> wrote:

>

> This explanation from Marcos makes sense, it was sort of how I was reading

> the part in which you wrote that the nurse said: " ...because we are using a

> new lab and they deal in % and not just numbers... " A horribly confusing way

> to state this on her part! Wow. Yes, 's doc wont even get into the

> discussion with us. Well, let me rephrase that, if we pushed it, she would,

> but never pushes it with her and just has been asking for the copies of

> the PCR tests and we figure we will call the labs ourselves...

>

> Good luck...

>

> @...: montereyunderwater@...: Thu, 24 Jan

> 2008 12:56:59 -0800Subject: Re: [ ] Question for all you professional

> PCR interpreters!!!! Help

>

> If the first is a ratio and the second a % there a factor 100 betweenthe

> two. So the first 0.0003 would be equal to 0.03%, what is aboutthe same as

> the second result. Assuming they gave you an accurateinformation. You should

> check on the lab report when you have it.Marcos.On Jan 24, 2008 12:48 PM,

> <vegasrnjen@...> wrote:>>>>> Thanks Sharon->> And I do feel good. And my

> CBC last week was good (normal for me) as well.> For the last 2 1/2 years I

> have been neg on FISH and all that. I guess I am> a little nervous about the

> decimal point. I wish they would just pick a lab> and stay with it!>> I

> don't know if I will be able to wait. I might call them back and have> them

> fax me the actual report so I can look at it myself. Not that that will>

> change anything but may shut me up for now..... >> Thanks for the

> response!>> Jen>>> **************Start the year off right. Easy ways to stay

> in shape.>

> http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489>>>

>

January 25, 2008

Dear Jen,

What a learning experience this has been for me!! I'm an RN (I don't

have exp in oncology though) and I think there was a break down in

communication. If there was a concern in the PCR value, I'm sure your

onco would be discussing this with you directly. I think it's

unfortunate a nurse gave you results and not the doc, as it is so

highly specialized and easily misconstrued.... I already know more

about Sprycel than the onco nurse at my oncologist office and I don't

have much of clue about all of the things your all are discussing on

this chat room. They just aren't up on this stuff because of the

wide range of patients. Still, not responsible thing to have a nurse

give you results who doesn't have a clue, really. Uhhh........is

some one going to do a class...maybe CML labs 101..... Try not worry

though. I think everyone made excellent points. Tell your doc to

stop having nurse give results because it's just not reliable for

you. Believe me, you know more than she does at this point!!

> >

> > Okay, so today they call me with my PCR results from last weeks

> blood work.

> > I was 0.0003 last time they gave me the result. Today this

nurse

> (whom I

> > don't have much faith in) called and told me " you are still in

> Hematological

> > remission) like I didn't already know that. Been there for 2

1/2

> years. I

> > told her I needed the actual PCR numbers. She told me

> 0.034. " Isn't that

> > good, how to do feel " ..... I told her better, before she gave me

> those numbers.

> > I asked her, " Isn't that a log more then last time as it was

PCRU

> last time.

> > She said no because we are using a new lab and they deal in %

and

> not just

> > numbers....???

> >

> > Has anyone ever heard of this or know what she is talking about.

> This is

> > only my 2nd PCR since being on Spyrcel and I hope I am not losing

> response

> > already? I am freaked out. I asked her if she would send the

> blood to the old

> > lab so I could have a comparison that is the same and she put me

> on hold to

> > speak with the doctor and then came back on and said, he said

> everything's fine

> > we will repeat it in 6 weeks.......

> >

> > Any suggestions???? Am I reading too much into this. I don't

> know if I can

> > wait 6 weeks. If I lost a whole log.....I don't know, I am

> baffled.....

> >

> > Help---

> >

> > Hugs and hope-

> > 35

> > CML 5/13/05

> > Gleevec 800mg until 8/07

> > Spyrcel 100mg 9/7/07

> > Wife and mother of 3 (12,8,7)

> >

> > **************Start the year off right. Easy ways to stay in

> shape.

> > http://body.aol.com/fitness/winter-exercise?

> NCID=aolcmp00300000002489

> >

January 25, 2008

Hi all,

Marcos has it right. If you reach CCR and stay there, you are doing really

well. If you hit MMR or a 3 log reduction, you are doing fantastic. Less

than 10% of CML patients ever achieve PCRU and their long term outcome is

the same as those achieving MMR.

Zavie

Zavie (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.2 log reduction Jun/07

3.6 log reduction Sep/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of Marcos

Perreau Guimaraes

Sent: January 24, 2008 7:17 PM

Subject: Re: [ ] Question for all you professional PCR interpreters!!!!

Help